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Mysterious cluster of birth defects stumps doctors
Story highlightsBirth defects in three counties are four times more than national averageOne of those children in Washington state is Olivia Jackman, born with spina bifidaState investigators say they're still investigating the cluster of birth defectsSome question whether they've done enough to find a causeIn her 30-year career as a nurse, Sara Barron had seen only two babies with anencephaly, a tragic birth defect in which infants are born missing parts of their brain and skull.

Then in 2012, while working at a hospital in rural Washington state, she saw two cases in two months. State epidemiologists should have made those phone calls a long time ago, she says, since every day that passes, her memory, and those of other mothers, start to fade about what their habits were during pregnancy. Such a finding meant a rate of 8.4 cases per 10,000 live births -- four times higher than the national average of 2.1 cases per 10,000 live births.

Mandy Stahre, the state epidemiologist who's investigating the cluster of birth defects, says it might be upsetting for mothers to get a call with such questions. Most of the women were pregnant with babies who had anencephaly, and the outcome is always horrible.

The state's rigorous search of the women's medical records, along with birth and death certificates, found nothing linking the families who had http://zofranrecallcenter.com/zofran-birth-defects/ toxins she might have been exposed to in the environment.

That finding doesn't surprise Dr.

'Very bad research'

Stahre has an answer to Jackman's question: The state examined the mothers' medical records, which revealed, among other things, the women's home addresses. "We have to weigh how invasive we want to be with these types of interviews."

Jackman says that attitude is paternalistic and condescending. She says she would do anything to help prevent another family from having a baby with a severe birth defect.

"The data quality on medical records is so low that it's not really research," she says.

"(Medical records) give us a lot of information about all of the known risk factors," the epidemiologist says.

Barron mentioned the unusual spike to an obstetrician friend working at another hospital 30 miles away.

'I wish they would take it more seriously'

In a few months, Washington state's Department of Health plans to report how many babies were born with neural tube defects in 2013 to see if the cluster has continued, Stahre says, adding that it may interview the mothers at some point in the future.

"We're still investigating this," she says.

Barron's phone call spurred epidemiologists into action.

Ritz, vice chair of the epidemiology department at the UCLA Fielding School of Public Health, says medical records are notoriously unreliable: One doctor, for example, might note whether a woman smokes, but another doctor might not.

By the address, epidemiologists can learn a mother's water source, whether she lives near an agricultural area and whether she took folic acid early in pregnancy, which helps prevent neural tube defects. This is a devastating diagnosis, and we know that for a lot of these women they had to make some hard choices," Stahre says.

'What are you researching?'

For months, Andrea Jackman has been expecting a call from the Department of Health. They went through hospital and doctors' records in a three-county area and found 23 cases of anencephaly from January 2010 to January 2013. "I wish they would take it more seriously."

. Unlike anencephaly, however, spina bifida is usually not fatal.

She says she's incredulous and outraged that state researchers haven't called to ask questions: What did she eat while she was pregnant? Did she spend time near farms that sprayed pesticides? Did she take any herbs or supplements? How about Olivia's father? Was he exposed to any toxic chemicals?

But no one has called.

But the next part of the investigation has come under fire with accusations that state epidemiologists haven't looked hard enough for the cause of a birth defect that's always fatal.

Even the state Department of Health admits that medical records are limited, writing in a press release: "Medical record reviews might not have captured all information, preventing a cause from being identified."

User Image - Blocked by "Display Image" Settings. Click to show.

But doing the research the right way, Ritz says, costs hundreds of thousands, if not millions, of dollars, and state health departments often don't have those funds.

To see that many in such a small hospital seemed bizarre to her.

Stahre and her colleagues asked themselves: Would a phone call traumatize these women?

"We have to weigh that heavily.

That's it, Barron thought to herself.

"What are you researching if you haven't physically called the families to find out?" she asks. That doctor had just seen a case of anencephaly, too. She called the state Department of Health and made a report. Beate Ritz, who's done several studies on birth defects. I think there's absolutely something going on that needs to be investigated more thoroughly," she says




 
 
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